Tuesday, August 16, 2011

8.16.11

We had another uneventful/wonderful MRI this morning. No Evidence of Disease still for our baby girl. Phew!

We have had a really nice summer. Spent time at the beach with family, spent a lot of time gardening in our front-yard-turned-veggie-patch. Evy's taste for food is beyond my expectation for a kid who had a feeding tube for a year. She basically eats everything I used to put in her feeding tube but in its non-liquified state. A three-year-old cancer survivor who regularly requests kale salad topped with quinoa? Makes my heart pitter-patter.

She is still doing horse therapy once a week, and Stella has been getting her own lessons for the last couple of months, too. Makes all of us so happy. I have also been volunteering at the ranch once a week so the horses and their amazing owners, Rachel and Boris, have really captured our hearts and made us love where we live even more. Horse therapy has been incredible for Evy. Before she started she could not sit on the potty because her core muscles on her stroke-affected side were so weak. Now she is potty trained and super-comfy on her potty. Very good.

We made a quick trip a couple of weeks ago to Boston to have a follow-up to radiation. Had a neuro-psych and met with our Boston team. It was like a very happy family reunion. Everyone is very happy with Evy's lack of disease and progress.

That's it for now. Hopefully this blog will just be me coming on every three mos. with a little update and more news of NED. Take care, Jill
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10 comments:

  1. Music to my ears! Such wonderful news for Evy and your family. Wishing you the best and enjoy the rest of your summer. Take Care!

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  2. Yeah for NED! And mmmmm, kale and quinoa. That does sound good. What an eater.

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  3. Oh, be still my heart.
    Such good news.

    Much love, and many prayers.

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  4. Was thinking of you the other day and stopped by to see what's been happening. The girls are just beautiful and the news of Evy's MRI is fantastic.

    Chris Ann

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  5. It had been a while since I checked your blog, though I did know about NED from FB. I'm so glad that Evy's doing so well!! The horse therapy sounds amazing. We're always thinking of you! We're hoping to make a trip to DC in November. I hope your schedule works out such that we can come see you!
    Lots of love!

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  6. HI
    My name is Jenna and I came across your site. Evy is an amazing, beautiful, courageous, strong and determined fighter. She is an inspirational princess Hero. I was born with a rare life threatening disease, and I love it when people sign my guestbook. www.miraclechamp.webs.com

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  9. Can you tell me how did you know about that? Thank you very much.
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